Survey on data for research

Another short survey – apparently this one has just five questions – and it is looking at how you feel about your personal data being used in fertility research.

The study is being conducted by researchers at Oxford University who are looking at the HFEA’s register of treatment cycles and outcomes, which is available to researchers if patients consent to allow them access.

Since 2009, all new patients have been required to complete a ‘Consent for Disclosure’ form (you can see an example here), which includes consent to non-contact research (where registry data may be used but patients may not be contacted by researchers) and contact research (where data can be used in research, and patients can be contacted again in the future).  Less than half of people undergoing fertility treatment agree to allow their data to be used for non-contact research, and the researchers are trying to find out why.

The researchers are keen for any women and men who have had fertility treatment, such as IVF, in England in the last 5 years to complete the survey which is anonymous, so you will not be identified in our research reports or findings. There is more information about this study here and this is the link to complete the survey https://surveys.npeu.ox.ac.uk/index.php/245857?lang=en

Fertility research request

Another research request, this one from a team at Oxford University. They are keen to interview people who have had IVF/ICSI in the UK in the last five years. They want to talk to people about their views on allowing their personal data to be used in fertility research – if you had treatment in this time frame, you would have been asked if you were willing to allow information to be used for research purposes.

If you have had fertility treatment at a clinic in the UK in the last five years and live in England, you can contact Dr Claire Carson if you would like to know more about this research project or are interested in taking part. You can call her on 01865 289755 or email claire.carson@npeu.ox.ac.uk

Could you help with a research project aimed at improving IVF success?

images-21Another day, another survey – but this one is to help researchers who are keen to find out more about why success rates following IVF treatment aren’t higher. Embryo quality plays a role here, and when treatment doesn’t work it can be down to abnormalities in the chromosomes which carry genetic information and this can result in miscarriage.

Some fertility specialists believe that testing the embryos by removing few cells and analysing them (a process known as preimplantation genetic screening or PGS) to make sure they don’t carry any of these abnormalities could lead to higher IVF success rates – but more research is needed to show whether this will work.

The researchers would be very grateful if you could fill in a very short survey to help them with their project, and pass on their thanks in advance to anyone who helps them!  You can find a link here 

 

What’s the truth about “safer” IVF?

You may have read reports about “safer” IVF in the last few days, focused on a study which used a naturally occurring hormone called kisspeptin to mature eggs during IVF treatment. The idea behind this was to try to reduce the chances of ovarian hyperstimulation – a condition which can be caused by fertility treatment. Although the majority women who experience hyperstimulation have fairly mild symptoms, it can be severe and even life-threatening, so being able to cut the risk of hyperstimulation during treatment would be a good thing.

I was really pleased to see that the brilliant NHS Choices has covered this story – if you aren’t familiar with the health news section of the website, it looks behind the headlines and tells you the truth behind the sometimes hyped headlines. In this case, most of the coverage seems to have been fairly accurate – but NHS Choices does point out some important flaws in the research.  Although it does show that kisspeptin has the capacity to mature eggs, only 53 women were involved in the trial and just 12 babies were born – so ar more research would be needed to prove that using it cut the risk of hyperstimulation. NHS Choices also explains that there was no control group in the study – so there was no comparison with a similar group of women going through standard IVF. What’s also important is the fact that women with polycystic ovary syndrome (PCOS), who are most at risk of hyperstimulation, were not included in the group – there will now be a further trial focusing on women who have PCOS.

You can read more about the research, and see a really good video which explains the study made by the team from Imperial College who carried out the work here